Pompe - Autumn Meeting Goes Virtual

Pompe - Autumn Meeting Goes Virtual

Posted On: 15/09/2022 Recently Posted!

Our Pompe Autumn meeting will now be held virtually on Zoom. This gives the opportunity for anyone within the Pompe community to join us to discuss all-things Pompe.

In an effort to save individuals transport costs and difficulties with scheduled train cancellations we have made the decision that our Pompe Autumn meeting will now be held virtually on Zoom.
We feel it is the most sensible decision at this time and while it is disappointing we won't get to see a lot of you in person, it does open the meeting up to the global Pompe community - everyone is welcome!

We will still have our special guest Katie Hoolahan, and we will also hear from our own Kevin Annesley's Mollii Suit experience, and you will be welcome to discuss all-things Pompe.

We will have a flexible agenda; the agenda below provides a few topics that we can openly share knowledge and experiences.

  • Cost of living with Pompe
  • Virtual Reality for Health, with Special guest: Katie Hoolahan, CEO VR Healthy
  • Mollii Suit - Functional Electrical Stimulation, as experienced by our own Kevin Annesley
  • Pompe community Projects:
    • Rare delights publication
    • Podcasts
    • Film shorts
  • Medical Research into new therapies:
    • Enzyme Replacement Therapy (ERT)
    • Substrate Reduction Therapy (SRT)
    • Cell and Gene Therapies
  • LSD Collaborative Community Survey 2022 - quick look at Pompe data


Pompe Community Meeting

- Saturday 8th October 2022
- 10am to 1pm BST

Join Zoom Meeting
https://us02web.zoom.us/j/85736624653
Meeting ID: 857 3662 4653

We look forward to seeing you and other members of the Pompe community!